Saturday, December 3, 2011

A spritz a day keeps the pressure positive

For years, we've been battling negative pressure. It's the stuffiness that lingers even after a cold. It's the goop that keeps ear drums from moving the way they should. It's been a real bother.

When I last complained about our tympanogram woes, I was looking forward to a summer trip to the audiologist. Surely, there could be no illness that would be impacting Julia's hearing in June.

Wrong.

In June, her left ear was clear. The right still had negative pressure which caused it to test 5-10 dB worse that the left ear.

The pediatrician suggested Zyrtec, so Julia dutifully learned to swallow a small pill every morning. Months passed and she was still stuffy. By fall, I'd had enough.

I made an appointment with a childhood immunologist/allergist. I feared Julia might be allergic to our house, me, or possibly her own self. Zyrtec didn't work, I was on a mission to find answers.

The allergist proved to be a torture chamber of epic proportions. They wrote on her back with a pen! They scratched her delicate skin with a white plastic thingy resembling the device that keeps the pizza box from collapsing into the cheese! They made her get one itchy bump!

At least she's allergic to something, I thought. It would be a shame to have made her scream like a two-year-old and still have no answers.


Wrong again.

The itchy bump was the "control." Julia is allergy free. Good news to be sure, but I admit to feeling a bit bummed. Surely, something is causing the chronic congestion.

The allergist prescribed Flonase. Each day my iPhone sounds an alarm that helps us remember to spritz Julia's nose with the very flowery-smelling drug. It's a miracle. In two weeks the congestion was gone.

Last Thursday, we returned to the audiologist. Julia cheered when the computer screen showed those two humps on the right side of the screen. "My ears are clear," she exclaimed.

Tim and I laughed. Then high fived. The ears are clear. The 5-10 dBs restored. Julia's hearing, for now, is stable. And Flonase is one of my new favorite things.

Wednesday, October 12, 2011

Providing a "rich" language experience

During a heated game of Monopoly Jr., a distressed Julia exclaimed, "Barn it!"

It wasn't "barn" she said exactly. It was something though that quite resembled "darn." I knew she was effectively trying out a new pseudo swear she'd half heard at school.

And here I am, squarely in the middle of a dilemma I knew was coming. Do I correct pronunciation of words I don't want her to say?

Some parents of deaf/hard-of-hearing children purposefully teach their children curse words. I once read a mother's blog post about equipping her deaf son with the whole English language. She didn't want him to be left out and so she personally clued him in.

I can't do it.

In six and a half years, I've kept almost all unsavory language in the confines of my own mind. Out loud I say, "shoot" and "oh man" and "holy cow." Sometimes the word "crap" slips out. I remind myself to be more careful. I don't think little kids are cute when they say it. Especially not my little kid.

I must leave this one up to the rest of society.

I handled the first mangled potty word to come home by teaching her the correct pronunciation. Then I told her we don't talk like that. Someday, I might have to explain why we skip "F" when we rhyme with duck. Hopefully by then she'll have some advanced skills to supplement her hearing, her classmates can write it down.

Tuesday, August 2, 2011

The importance of special needs playgroups

At our first IEP meeting for Julia, Tim and I were determined to get her placed in an approved private school for the deaf. We thought that intense environment was the way we could be sure she would learn to speak. We were hungry for a sure thing.

The other part of the IEP team didn't see things our way. They told us about least restrictive environments and how it would be harmful for Julia to spend all of her time with deaf and hard of hearing kids. I couldn't imagine developing a network of friends with similar challenges being anything but a benefit.

Fortunately for those professionals involved in the meeting when my daughter was three, Julia did learn to talk. She impresses us with her completely intelligible speech during every waking moment of the day. I also made sure she connected with some friends that also have hearing loss.

I didn't give up on allowing Julia to makes some "magic ear" friends because of my own experience growing up as the single solitary child in southwestern Pennsylvania that wore a Milwaukee brace. I know that if it had been hearing aids rather than a scoliosis fixing appliance, I'd never have seen a person under the age of 60 with gear like mine. It's a bit lonely. There are times in life when an individual is the last thing you want to be.

We have a playgroup that meets regularly so we can keep in touch with kids that deal with every sort of hearing loss: unilateral, mild, profound, and Julia's severe. The kids use all kinds of equipment. They admire each other's newest selection in ear molds. The parents always have something to talk about.

Sharon Clougherty, director of early intervention for Achieva, was quoted in the Pittsburgh Post Gazette this May saying, "A decade ago, playgroups were a 'recognized and funded format' for children receiving state-funded early intervention services. They are no more. The state won't fund them."

Luckily, there's no funding necessary. All it takes is a little planning, some advertising, and a bit of help from the professionals that work with your child. The kind of support you get from group of families in a similar situation is well worth the work to start your own group. And if you and your deaf/hard of hearing child happen to live North of Pittsburgh, please join our group. We'll be happy to have you!

Tuesday, July 12, 2011

Swim class

For the past two summers, I've thought about enrolling Julia in a swimming class. She is a true water baby, a fearless, underwater mermaid type.

Swimming is complicated. We've learned a bit of ASL and I talk pretty loud right in her ear. We get by together at the pool.

Group instruction with Julia unaided seemed pointless at best. Thinking that someone must have encountered this problem before, I talked to people at the Western Pennsylvania School for the Deaf. They had no advice.

Finally, friends of ours told us about a fantastic swim class offered by a local woman in her backyard pool. I signed Julia up. Then I had the requisite two nights of anxiety dreams while anticipating the start of class.

The program is fabulous, but the setting still presents many challenges. One of the instructors, a teenage boy, turns his voice off and makes exaggerated lip movements. He also attempts to pantomime. I told him that he can just talk loud at close range. He seems to think that's weirder than what he's been doing. Eventually, I plopped myself at the side of the pool to keep Julia from floating into the deep end while simultaneously directing her to stay above the water while they're demonstrating new strokes. I repeat some of the directions loudly into her ears.

I sign "pay attention" a lot.

I feel tired when the class ends.

The effort seems to be paying off. There seems to be some structure being added to her movements. She taught her instructors how to sign "kick." Surely, by the end of class they'll also pick up "wait" and "pay attention."

Everyone is learning and I'm proud of us. Truly, anything is possible.

Wednesday, June 15, 2011

2012 PA Budget Still Without Funding for Newborn Hearing Screenings

Out of the billions and billions of dollars the Commonwealth of Pennsylvania will spend in 2012, Governor Corbett and state lawmakers have opted to spend $0 on the Newborn Hearing Screening Program.

Currently, the Pennsylvania Newborn Hearing Screening and Intervention program seeks to assure that all newborns:

  • are screened for hearing loss within the first 30 days,
  • are diagnosed within three months, and
  • receive prescribed treatment or intervention services within six months of birth.*
We have one more chance to contact our state senators. Please email me (magicearkids at gmail dot com) for a list of main points you can use in a letter to your senator.


*List of program goals taken from the PA Newborn Hearing Screening and Intervention web site.

Tuesday, May 24, 2011

Growing up hard of hearing: Our buddy, Alex

Julia and I first met Alex a couple years ago. He was part of what we called "Magic Ear School," a hearing impaired classroom put on by our county's early intervention program. We got to know Alex, his mom, Tina, his dad, Rich, and little brother, Ethan while standing outside the preschool classroom.

Alex, now 5 1/2, wears bright blue hearing aids.

Julia is constantly asking me what I'd wish for if I found a magic lamp/wand/star. One day she said, "I wish there was just one sound I couldn't hear and everything else I could hear with my ears just plain."

"Wouldn't you just wish to be able to hear everything?" I asked.

She thought about it for a while. Then she says, "no, I wouldn't wish for that. If I didn't wear hearing aids I wouldn't get to go see my audiologist. I wouldn't get to play with Alex."

Playing with Alex is that fun.

I asked his mom, Tina, some questions about their experiences and learned more than I ever could have in the preschool parking lot!

When did you find out Alex was hard of hearing?
We discovered Alex hearing loss at age 3 1/2.

How did you come to the decision to get him hearing aids?
We decided to aid Alex after a time period of him complaining of his right ear bothering him and ringing off and on. We had made a trip to the ENT and audiology for a hearing test. At the time he had fluid and infection and was going to get a 4th set of tubes in both ears and get his adenoids out. A month after that surgery we were to come back for a check of his ears by ENT and hearing by audiology (all taking place at Children's Hospital). At this point in time his hearing test showed the same result as a month earlier before the surgery and it was then decided to aid Alex.

Alex is in kindergarten this year. How is that going?
The first year of school has been good. It took some time at the beginning of the year to get Alex's hearing support services set up because we sent him to a private school. We had to dual enroll Alex in the public school district as well as his school. The public school provides Alex his hearing support services through the county's educational services and support division.

Alex seems to have transitioned well into Kindergarten overall.


Soon Tina and I will be parenting first graders. I just can't emphasize enough how wonderful it's been to meet and talk to other parents of kids with hearing loss. Thanks for being interviewed, Tina!

Sunday, April 24, 2011

Welcome!

Please explore the tabs at the top of the page for resources and the personal experiences of myself and others that are parenting children with hearing loss.

If you are interested in being a featured parent or have a personal experience with growing up deaf or hard of hearing, please email me at magicearkids at gmail dot com.

Parent Profile: Dr. Schorr

Today we get to meet a mom and developmental psychologist who specializes in the unique social and emotional development of children with hearing loss.

Dr. Schorr's Story

My son Moshe had severe neonatal hyperbilirubinemia (bad jaundice) that caused his hearing loss. He failed the hearing screen when he left the NICU. The neurologist who followed him made the diagnosis at 2 months. He did not react in any way to sound.


Moshe's hearing fluctuated dramatically for three years and he got hearing aids at age three. I remember taking off of work to be with him the day he got them, thinking that he would need his mother if he would have such a life-changing, life-defining thing like hearing aids! I laugh now, since he is such a regular kid, doing regular things and his hearing aids are really not the most important part of him.

My son has had a lot of challenges in school along the way. He is now in 9th grade at a rigorous high school. I think that the hardest part has been not hearing everything the kids were saying and therefore, not knowing exactly what is going on. He is still coping with this challenge and it gets harder for parents to be involved when kids get older.


My website, Hearing Families, is dedicated to parents of children with hearing loss. I use it to share experience on issues that often fall between the cracks of professional expertise - not audiology and not speech. I focus on social and emotional issues that are very important to parents raising a child with hearing loss.

My main message is high expectations and realistic situations! That means to have high expectations. Children are a product of their expectations, if we give them the message that they CAN do it, they just might! At the same time, I encourage parents to think about things from their child's perspective and keep situations realistic enough that their child can succeed. Set them up for success.


Thank you, Dr. Schorr! Social and emotional issues are a very important part of the equation. I'm glad you've provided us all with resources to conquer that type of problem.

If you are interested in being a featured parent or have a personal experience with growing up deaf or hard of hearing, please email me at magicearkids at gmail dot com.

Hearing Loss Profile: Kym

Today's profile is a deaf adult and the parent of a son with mild hearing loss.

Kym's Story

My name is Kym and I run the blog 'Cuteness of Curiosity'.  I blog about my crafts, hearing loss, LGBT issues and my wonderful family. I live in New Jersey with my wife and our 2 teens.  Our son who is 12 1/2 has mild bilateral hearing loss.  I enjoy French movies, reading, gardening, the beach and am an avid cross stitcher and run a small shop on-line.  I work full time at a craft/art store and I love it.  Although, being deaf makes it challenging dealing with customers.  But, I love a challenge, so it certainly makes the job more interesting!
  
When I was 9 years old, I had the Mumps and a high fever which caused profound deafness in my left ear.  As a teen I started to lose my hearing in my right ear and was diagnosed with severe/moderate hearing loss in my right ear.  I refused to wear hearing aids at the time, I just didn't think they were 'cool' at that time, so my studies suffered terribly because of this.  I social bluffed my was through my young life and it got me through, as well as leaning on my friends to help me.  Now that I am older, I realize how wrong this was and I wish I would have done things differently.

For years I had been wearing two bte hearing aids from Beltone.  Now, I wear just one in my right ear.  I also use a Assisted Listening Device in certain situations, I've also used CART, a note-taker and interpreters.  In my 20's I started taking classes in ASL.  This changed my life.  Once I met other deaf and hard of hearing friends and was able to sign and use other communication techniques, without just having to smile and nod and not understand all the time.  Sign Language  has been my most affective means of communication with family/friends.  I also am not afraid to let people know I am deaf and that I may need them to accomodate me in different ways. 

My advice for parents is talk to your school, let them know if you need special educational needs, a 504 plan or an IEP.  Do what you have to do to make sure your child is accommodated, so they don't miss out on any part of their education.  See if your state has a Deaf/Hard of Hearing Organization that can come to your child's school and educate the staff on hearing loss and amplification tips.  Keep an open line of communication with your child so you know what needs may not be met and that you can help with.  Give your son/daughter lots of love, hugs and kisses and be their support system.  Depending on the hearing loss maybe they would benefit from Deaf School Education. 

And don't forget ASL it could open many wonderful doors for you and your family.


Next week, we're going to an ASL workshop. Such timely advice from Kym!

Happy Easter!

Sunday, April 17, 2011

Playing in the rain

Quite some time ago, Tim suggested we get some kind of water resistant wrapping for Julia's hearing aids. She could then have a bit more freedom around water and in light rain. She could, he thought, wear the aids in some situations that we currently deal with by taking them out.

I was opposed to the idea.

You might say that I'm overprotective of Julia's hearing aids. The thought of sending them in for repairs makes me sweat. I have this nightmare scenario replaying in my mind where Julia has to go to school without her aids. It is my personal Armageddon.

I figured we'd always just be safe and take Julia's aids out to play with squirt guns. We'd always have a raincoat or umbrella. We'd never ever let her play in the rain.

Then spring soccer happened. After four consecutive canceled practices, the team finally played on a sloppy muddy field. If that wasn't harrowing enough, the next practice was in a mild rainstorm. Julia played soccer in a waterproof windbreaker with the hood up.

On the way home from that second practice, I had to admit he was right. We need a waterproof wrapper for the hearing aids. Ear Gear is coming to the rescue. The testimonials are promising, but really I hope having protection will just chase the rain away entirely. Soccer is more fun in the sun.

Sunday, April 10, 2011

My nemesis: negative pressure

In January, Julia visited the audiologist. The appointment, as always, began with a tympanogram. The test showed negative pressure.


I'm no professional, but I've been to this particular specialist enough times to know that those humps are supposed to be over to the right hand side of the box. When they show up on the computer screen as left-side lumps, my heart sinks. We might as well just go home.

Negative pressure makes you have that stuffed up, underwater feeling. You can't hear as well. I'm annoyed by it with my normal hearing. For Julia, it's a real problem.

The audiologist told us in January that Julia should return when her ears are clear. She suggested May. Pumped full of EmergenC and having a really healthy winter, I thought perhaps we could get away with late April. I made an appointment for April 21st.

This week found Julia congested and snotty. I don't need a fancy machine to tell me her ears have negative pressure. I'll have to reschedule the next audiologist appointment.

The part that really upsets me is the length of time my nemesis, negative pressure, hangs around. The cold will be gone for six weeks before the pressure returns to normal. It makes appointment planning difficult. It makes communication more difficult.

The next appointment is set for early June. I'm hopeful there will be no new colds before then.

Sunday, April 3, 2011

The Endeavor

The winter issue of the American Society for Deaf Children's publication, The Endeavor, is now available. You might recognize the article on page 19. It originally appeared here in December of 2009.

When I started writing about Julia's hearing loss with a post about medical assistance in the summer of 2009, I thought our family had reached some kind of plateau. I finally felt that I was in a position to give advice or at least commiserate with other parents of deaf/hard of hearing children. With all of our back story told, I really thought I would run out of hearing aid stories.

No such luck.

The last visit to the audiologist showed that Julia's hearing progressed to an 80 dB loss. That was what struck me when I re-read the (Mis)Understanding Hearing Loss article. In December of 2009, it was 55 dB and I still mourned all of the things she couldn't hear.

Now I understand better, but still disagree with, those moms years ago that implied my child wasn't deaf enough to cause me any worry. 55dB does sound less impressive than 80dB. Still, there are great challenges for children with mild losses and unilateral losses. Parents of hard of hearing children shouldn't be in a deafness competition. I feel acutely aware of that as the decibels change but the day to day issues remain the same.

Looking back on all that I've written, I can see in black and white that dealing with hearing loss is a lifelong endeavor. It's not a major thing every day, but it's always on my mind. It will always be our thing. There's no danger of running out of thoughts that will make their way onto the blog.

Perhaps some of those thoughts will even make their way into The Endeavor. I do think my writing looks better in print.

More news from the ASDC
Professor Karen Munoz in the Department of Communicative Disorders at Utah State University is conducting a research study to find out more about parents experiences in getting hearing aids and when their infant or young child is diagnosed as deaf or hard of hearing.

Monday, March 28, 2011

Corbett to cut PA funding for newborn hearing screenings

Tom Corbett's budget has been making lots of news here in Pennsylvania. The big ticket items have been getting a lot of coverage. Cuts to education and Medicare aren't going over so well. Then yesterday, I found out that the proposed budget will eliminate funding for the Newborn Hearing Screening program.

I've written in passing about Pennsylvania's newborn hearing screening. Julia, born in 2005, was screened as part of the program. She passed that screening and was found to have a moderate hearing loss as a toddler. I was hopeful that rather than can the whole program, we might extend it to include another screening around age 3.

Now I'll be writing a letter just to save the part of the program that's already been worked out.

I hope my Pennsylvania readers will join me in contacting our state lawmakers. PA currently tracks and follows up with new parents after the initial screening. They are now doing important work to make sure kids with hearing loss are put into the early intervention system. 

Without state funding, the effort to identify hearing loss in infants will be a disjointed mess.

Please visit this site to send a message to the state legislature.

Sunday, March 27, 2011

Parent Profile: Mimi

This month we get to meet Mimi of Woven by Words. Mimi's son was diagnosed in 2009 with hearing loss.

Mimi's Story

My son, Doodle (7 1/2), has had various health issues from birth. Nothing outrageous or out of the ordinary, just out of the ordinary for our family. When he was born he was slightly tongue tied, medically known as Ankyloglossia. His doctor had no concerns about it and Doodle had no issues nursing. When he was 1 1/2 we found out he had an umbilical hernia. I think he was about 3 when he had surgery for the hernia and while he was under they fixed his tongue tie.

A couple of years later Doodle had numerous strep throats and it was decided by our ENT that he needed to have his tonsils and adnoids taken out. The recovery from the surgery took a bit longer than we expected, in that he was very nasally. He talked through his nose for about 3-4 months and it gradually went away.

In 2009 he failed his hearing test at school. He was sent to the ENT who set us up with the audiologist. She was spectacular, the audiologist. Doodle just thought she was awesome. We did a few different testings and they determinded he had hearing loss in his left ear. Not enough to make the matter urgent and she left the decision up to me as to whether we should get him a hearing aid.

I decided we should go for it because I want my kids to have every opportunity to succeed and if he was going to miss something at school because he couldn't hear, that wasn't acceptable to me. We went to the manufacturer's website so he could choose the color of hearing aid and he went with the hair color he has, which is blonde. He has a Latitude 8 Mode II from Unitron. I wish they would have some cool designs for the hearing aids so the kids could be "cool" with them.

I wasn't sure how Doodle would do with the hearing aid, but I wasn't too concerned. He's pretty self-confident, but you never know how a child will react to possibly being seen as "different". I didn't want to make him self conscious in a negative way about it so I made sure to tell people to tell him how "rockin'" his hearing aid is, to use the word "cool", etc. I wanted to build him up and help him feel comfortable with wearing it. Let me just say, we have some great people in our lives!

Doodle thought it would be so cool to have a hearing aid because in the movie Up the old man was able to turn his hearing aid off and not have to listen to anyone around him. It was tough to break it to him that his hearing aid wasn't coming with an "off" button. Let's just say, he was bummed.

He's still adjusting to the comprehension that he will always have a hearing aid. A couple months after he had it he wanted to "test" himself to see if he'd gotten all better. He took his hesaring aid out and ran into another room asking me to talk so he could hear me. I was talking and he couldn't hear me. I felt sad for him, because I didn't realize he didn't understand that this was a "forever" thing.

School is going great. He has been a great student and I'm sure the hearing aid will only benefit him as he grows up. He hasn't needed any classroom help or assistance. He sits in the back of the room because the hearing aid is doing his job, which allows him to do his...be a studious student!

The only thing I have to say to other parents is, this doesn't have to be seen as negative. We all have "something" in our lives. Sure, my son hasn't lost complete hearing so it's not the same as someone who has profound hearing loss. Would I feel sorry for my son? Absolutely, but it's not the end of the world. They have to adjust and we have to adjust. It's so imperative for us to have a positive outlook so that our kids pick up on it. I also say we're our kids biggest advocate! I called the school as soon as I found out Doodle would be getting a hearing aid. The school counselor was willing to go into the classroom and talk about hearing loss or about bullying in general (not focusing on my son in that regard). The principal was willing to help out with any help we might need with this transition.

If you don't understand something, need more information, or have any concerns, ask questions! Go see the ENT or audiologist...again. This is your child's health and you are in charge of it. Do you feel like you need a second opinion or your child might need some different testing? Then I say go for it. There's nothing wrong with a second opinion. Do research. Get in touch with hearing aid companies. Try to connect with people who have gone through something similar. Remember, you aren't alone in this journey.

Thank you so much for highlighting our experience in this journey of hearing loss! You can find me at Woven by Words.




We are our child's biggest advocate. Thanks so much for sharing your story, Mimi!

Sunday, March 13, 2011

What?

Julia has developed a "what" reflex. Whether or not she hears, even if she understands, she asks "what?"

"Julia, please clear the table. Dinner is almost ready."
"What?"

Silence.

"You want me to clean up for dinner?"
"Yes," I reply, attempting to conceal a deep sigh. Each "what" drains a little more of my life force away.

I've asked her to clarify whether she's heard me. I told her I need something more than "what." I'd love to know if there's something going on that needs to be reported to the audiologist.

"Can you repeat that?" "Excuse me, I didn't hear you." Or just answering a question/following directions. All of these would be wonderful options. My latest attempt at ridding our house of useless reflex responses is to say nothing when she makes that infernal query.

Still, every day it's "what, what, WHAT?"

At least she doesn't say, "huh?"


***A while back I started a Parent Forum here at BTaC. If you have experience with hearing loss (parenting, personal or professional experience), please hop over and exchange some ideas. I'd love to know how other people figure out if their child is not hearing or not paying attention or just demonstrating a bad habit.***

Sunday, March 6, 2011

Perusing a different kind of catalog

Almost three years ago, Tim and I chose flesh colored hearing aids and clear ear molds for our newly diagnosed daughter. I wanted the aids to blend in to her golden brown hair. As if not seeing them would make the hearing loss disappear.

It was really hard to see her hearing aids. I tried taking pictures of her on the first day as she danced and signed "loud." You can't really tell she's wearing them in the pictures. I had to walk up to her and lift her hair to make sure she was still wearing them. There was no chance of slyly figuring out from across the room if my preschooler had tossed the expensive equipment to the dog.

Over time, we got more daring. There were slightly pink ear molds then pink with sparkles. Then Julia started choosing on her own.

Julia loves getting new molds. She got purple, hot pink and white tie dyed looking ones a while back. Most recently she chose rainbow stripes.

The audiologist has colorful brochures with lots of crazy color combinations. These color choices aren't enough. Julia knows now, as a big kindergartener, that other kids have fancy hearing aids as well. A person can have animal prints or bright metallic colors. I pulled up Phonak's web site one day so she could page through the options.

Julia will get new hearing aids in about two years. She's all about advanced planning.

Hearing loss has brought us a lot of new catalogs to consider. I can thank the school audiologist for suggesting an alarm clock that shakes the bed. On any given day Julia might be perusing the American Girl catalog* or another filled with ear gear and tube riders.

There's a lot of stuff to make hearing aids an expression of a little girl's personality. I think some kids are even jealous of those rainbow ear molds. Wait till they see the cool alarm clock.

*American Girl dolls can now get hearing aids too!!! From americangirl.com/hearingaid
There's now one more way to personalize your 18" My American Girl® doll: hearing aids. When you admit your doll to the Doll Hospital, our experts will perform a permanent piercing behind her ear to ensure the hearing aid is expertly fitted—in one or both ears. For more details or to order a My American Girl doll with a hearing aid, call 800-845-0005.
The hearing aids, which are removable, cost $14 and are also available for My American Girl® dolls at time of purchase and at retail locations.

Sunday, February 27, 2011

Hearing Loss Profile: Melissa

Today we get to meet Melissa. Please visit her blog, A Journey with a Cochlear Implant.


Lissa's Story


Hello, my name is Melissa but I'm also known as Lissa. I grew up learning to communicate through spoken language, but of course this does not mean I cannot sign. I can- I love to sign with deaf friends (those who use BSL as their primary form of communication) and my mum signs to me in the mornings when I do not have my implant on.
I was diagnosed at 9 months of age with severe-profound bilateral sensioneural hearing loss. Doctors and my parents think my hearing loss is due to prematurity and being given medication. I was given a group of antibiotics known as aminoglycosides- without them I would not be here today. I was born as one of triplet girls (one did not survive) at 28 weeks gestation.

My parents were warned to watch us for any developing disabilities over time. I was aided with my first body worn hearing aids at the age of 1 year old. My mum has always told me that I was not one of those kids who hated their hearing aids and tried to get rid of them at every oppurtunity. I LOVED my hearing aids!
I got my first pair of BTE's (behind the ear aids) at the age of 5. I attended a school for deaf children from 3-11 years old.

My hearing loss progressed to profound at most frequencies around the age of nine years old, so I went forward and went through the assessment process for a CI. In October 2000, at the age of 10 1/2 years old, I was implanted in Manchester with a Nucleus.

I attended a local-ish comprehensive school from 11-16 years, I was mainstreamed for the first time in ALL classes although with a Communication Support Worker (CSW). Having these CSW's in school and college has provided me with the ability to advocate for myself and manage real situations.

I am still a bimodal user, as I wear both my processor (in the left ear) and my hearing aid in my right. It works for me, since both (especially with the use of my CI) helps me to hear.

My advice to parents of young children is follow what you feel is right for your child. Any method of communication, amplification etc will lead to your child being successful. A deaf child can be anything that they want to be. You're the parent and whatever you feel is right, do it. Do not let other people sway you but let them offer you guidance, as they cannot chose for you.

During my schooling years, I have had many types of equipment to help me, in primary and secondary I have gone through many FM systems and I think my favourite one was the FM Genie, it was more modern and small. But nowadays I'm sure they are a lot smaller!!

Being the only deaf member of the family, can sometimes be frustrating but with requests and giving my family ways of to make life easier for me, they can change!

I am now working a day care nursery with children aged 0-5 years, communication is quite easy but if I don't understand I ask to repeat, but it is not a major problem.



Thanks Lissa! It is important as a hearing parent that I understand the frustration caused by being the only hard of hearing person in the family. I'm glad your family was able to adapt. There's hope for us yet!

If you are deaf or hard of hearing and would like to be featured here at BTaC, or if you are a parent of a deaf or hard of hearing child, please send an email to bigteethclouds at gmail dot com to be interviewed.

Sunday, February 20, 2011

The tinge

tinge –noun. a slight admixture, as of some qualifying property or characteristic; trace; smattering: a tinge of garlic; a tinge of anger.

In my case, a tinge of why us?

I get this hint of a feeling occasionally. It's nothing like the initial blow of finding Julia's hearing loss. That was grief. The grief was compounded by guilt. After all, it could be worse. I grieved for three weeks and then felt angry at myself for still feeling grief. I dealt with grief, anger, and guilt for the balance of the first year.

If only I'd known then that three years later I'd still be feeling the tinge. That very faint, pathetic feeling when I wonder why this happened to us.

Why us? My mind whispers when she's up in the night gagging and I have to run for one of her hearing aids to communicate with her.

Why us? I murmur when she rips out the right hearing aid because "it's not working" only have me troubleshoot both and discover that it's actually the left one that's blocked. (She twisted the tubing 360° when she put it in.)

Why us? I groan as a less than two-year-old dancer girl fixates on the pretty rainbow ear molds in my daughter's ears and investigates them with a stiff poke.

I'm not thrilled to still be feeling it, but I let myself have a moment now. There's no point in feeling guilty. This is our thing. Other people have more difficult challenges, but that doesn't take away my right to feel occasionally dismayed at our occasional hardships.

It is after all, a "slight smattering," perhaps one day, the tinge won't even exist.

Sunday, February 13, 2011

Future IEP notes

Working as a special education paraprofessional in our local school district has given me lots of exposure to Julia's future educational environment. I've worked in different classrooms in first through fifth grade. I've spent time in the middle school. Currently, I'm doing a stint in high school.

The grade school teachers ask for students to get up and answer math questions. The little children give correct answers while facing the white board in barely audible voices. This is going to be a problem.

An assembly turned boy versus girl shouting match got really loud. Several special needs kids were pulled into the hallway to escape the sound of competitive screaming/shrieking. This is going to be a problem.

High school students are required to swim as part of gym class. I learned that kids with an IEP can opt out of this requirement. Good to know.

So, I have a page in my trusty notebook dedicated to "ideas for future IEPs." For next year we'll talk about tennis balls on chair legs, the sound field and personal FM. I'll inquire about getting a Mic for those student teachers to help clarify their shy white board mumblings. I'll ask that Julia have the option to remove herself from any assemblage of shrieking kids or at least have someone knowledgeable enough to remind her of her hearing aid volume control.

I feel informed and prepared from my time spent subbing. Come IEP time I'll be prepared with my notebook. There's stuff in there for years to come.

Sunday, February 6, 2011

The Hearing Restoration Initiative

Julia's certified teacher of the deaf has been teaching her all the parts of the ear. Julia can draw a lovely cochlea. One day she explained the function of the Eustachian tube. She knows that her hearing loss is most likely due to missing hair cells on her cochlea. Her knowledge about ears is impressive.

We don't know what caused her to lose hair cells. We'd all love to have them back.

The Deafness Research Foundation (DRF) is launching a fundraising campaign to raise money and awareness for hair cell regeneration. They're calling it the Hearing Restoration Initiative.

I first learned of this research at the AG Bell convention last summer. A research symposium presenter went into detail about the use of mouse cochlea to try to get mammal ears to behave like chickens. Chickens, I learned, regrow hair cells and repair their hearing spontaneously. In a month, a deafened chicken can hear again. Mammals can't do that.

With "proper funding" DRF thinks deafness could be cured in ten years.

Deafness could be cured. I like the sound of that.

Sunday, January 30, 2011

Parent Profile: Kristen

This month's parent, Kristen, is the mother of four, ages 13, 11, 8, and 5. Eleven-year-old Vincent is hard of hearing.  Kristen writes a lovely blog called Mothering Mayhem where she records memories of time spent with her children.



Kristen's Story


My son was born in 1999, right after the newborn screening program was started in Virginia hospitals. At birth, one of my son's ears failed the newborn hearing screening and the other one passed. Because we had no family history of hearing loss, the hospital suggested that the failure was most likely due to fluid in his ear from the birth process.


Because of the relaxed attitude by the doctors, who brushed off the hearing test results, we weren't concerned about his ear failing the screening. We were told that even if he did have hearing loss in that one ear, the only considerations he would receive would be preferential seating in school.


I took our son to an audiologist at Children's Hospital many times for hearing tests, but he was a colicky baby and a poor sleeper. He always awoke before the end of the test.


At twelve months old, in a last ditch attempt to get conclusive test results, he was sedated for a BAER test at Children's Hospital in Washington, DC. We were shocked when the test results showed a severe mixed conductive hearing loss in both ears.

At 15 months old, Vincent started wearing his first pair of hearing aids. He loved them right from the start. He never pulled them out in frustration.


When our son was younger, my husband and I were so worried about his future. We stressed and fought with the school for services. We went to classes and seminars. We basically freaked out that his classrooms weren't acoustically perfect. 


That was a very bleak time. 


We spent so much energy fighting. Life improved after we decided to focus on giving Vincent everything he needed ourselves. He still went to school, but we would do homework together everyday. I could make sure he knew what he was doing and didn't get behind.


Vincent's hearing loss is progressive. For years, his hearing worsened quite a bit. Sometimes there would be a slight improvement, but the overall trend was always downward. After consulting many specialists, we were told that the fluctuations were not a good sign. Vincent would become totally deaf eventually.


For a while I was overwhelmingly sad about his prognosis. I wondered if it would have been easier for him to have been born deaf, rather than going through another period of adjustment (most likely) in his teens.


Vincent has had two ear surgeries in an attempt to stop the progression. The surgeries appear to have stabilized his hearing for the time being, but the future is unclear.


As two hearing parents, we chose to aid our son because his loss still allowed the use of hearing aids and we thought communicating via speech would make his life easier. We made the decision that we thought was right for him. Had we known then that he would eventually lose all of his hearing, we probably would have chosen an alternate route. If his hearing does worsen, now that he is older, he will have a choice about cochlear implants, sign language, or both.




Thanks for telling your story here, Kristen!  There are so many different kinds of hearing loss and many ways to come to a diagnosis.  I wish you strength moving forward as you continue to advocate for Vincent's changing needs.


If you are interested in being a featured parent or have a personal experience with growing up deaf or hard of hearing, please email me at bigteethclouds at gmail dot com.

Sunday, January 23, 2011

Making an equipment snafu a bright spot in parenting

The school has me on speed dial. They call me to work there. They call with horrible news. They call when I forget to put on the FM boots.

On Tuesday, they called because through some strange series of events Julia lost an FM receiver on the floor of the classroom.

We have our very own FM system and receivers at home. The teacher wanted me to bring one of ours to the school so they could go on with their day. They were already operating on an ice storm induced two hour delay schedule.

In the six minutes it took to get to the school, I had a really bright idea. Julia has been having a difficult winter with her hearing aids. She's been complaining that they hurt her. One day she came home with a note from the hearing teacher. "FYI- Julia's ear was bleeding today," it said.

This is all because her ear canals are very dry. We've been applying oto ease, a hearing aid lubricant, in the morning in an attempt to moisturize her skin. It helps a little.

We hypothesized that all of this might go better if she didn't have to take her hearing aids out at least twice every school day. The powers that be insist that the FM receivers must stay at school. Julia has to take her aids out to put the receivers on each morning and take them off each afternoon.

My new bright idea is to send her back and forth already wearing our receivers from home. The school provided receivers can stay at school. In fact, one of them is busy hiding somewhere on the floor right now*.

Why didn't I think of this sooner?


*The receiver was located later in the day. We're still going to try using the equipment from home. Hopefully, her ears will heal if the aids are in and out less.

Sunday, January 16, 2011

The latest hearing test

By the time we headed to our usual audiologist for tests to confirm the additional loss found at last month's ENT appointment, Julia was sneezing and sniffling.

In spite of being pretty congested, the tympanogram revealed only slight negative pressure. That means that her hear drums were still moving. Good news.

In the booth, Julia struggled with a word recognition task. I sat behind her and listened to her garbled attempts at repeating the audiologist's list of words. As usual, I tried to piece together Julia's behavior and the audiologist's face to guess at how it was going.

I still can't figure it out.

After air and bone conduction testing, the audiologist thinks there is some conductive component to Julia's hearing loss. The bone conduction test came out the same as our old tests, about a 65 dB loss. Through the air it was the same as December's test, down around 80 dBs. Julia's hearing aids have been adjusted.

We have to go back in May. Hopefully, then her congestion will be cleared up. If her slushy speech doesn't right itself in a timely fashion, we'll be going back to the ENT or pediatrician. Sinuses and adenoids might be making her head stuffy.

Though it's good to think that this isn't further progression of the sensorineural hearing loss, she's still hearing worse today than she was six months ago. As with all things related to hearing loss, it seems there's just more we don't know. The only thing that's certain is that we're looking forward to spring.

Sunday, January 9, 2011

Cue Camp as an incentive

Cue Camp Friendship is happening this June in Maryland. I am determined to help Julia understand cued speech before swimming pool season. Cue camp would be a good opportunity to help Tim and I gain speed and teach Julia. It's getting harder to communicate without hearing aids. We have to do something.

Little Wonder doesn't want to go.

Last summer's AG Bell Convention is burned into dear Julia's memory. It turns out she didn't like the kid program. When I mentioned going to SeaWorld next time we're in Orlando, she said, "I'm not going on that bus again!" In her mind SeaWorld is only accessible with a bus load of strangers (day care workers and other children in the AG Bell kid program). I didn't realize it was going to traumatize her!

After explaining that Mommy and Daddy would go with her, she's on board for any hypothetical  visit to an Orlando attraction.

Separating from us for any portion of a vacation is getting a big thumb's down, so I have attempted to make a bargain. If we can learn to cue enough to get by for a day at the beach by May, we won't go to Cue Camp. If we don't learn it, we'll give up three days of our vacation and some of our togetherness.

All parties have agreed to these terms. We haven't practiced even once. I'm keeping the Cue Camp registration form close by!

Sunday, January 2, 2011

Taking it one decibel at a time

Late last month, Tim insisted that I take Julia somewhere to figure out what's going on with her hearing. She's been a bit off lately, mishearing and dropping some sounds she'd previously conquered. I made lots of excuses. She's tired in the evenings. She's congested. She'll do better after cold and flu season is over.

The Dad wasn't interested in excuses, so I emailed the audiologist. We determined it would be best to make an appointment with the ENT. Dr. C. could check for fluid. They can do a hearing test at the same time to determine the impact of the congestion/fluid.

After almost two hours Dr. C. and a different audiologist than our regular one determined that there is no fluid in Julia's ears. There's no ear wax. Their testing revealed more hearing lost.


The black x's and o's are the results from the most recent test. Those green ones are where we started when Julia's hearing loss was first discovered. It started as a 55 dB loss. Now there are marks at the 80 dB line.

Honestly, I've still been waiting for the last 15 dBs lost to come back. I figure there's always a chance of a bad test or some incalculable stuffiness that caused things to be a bit different. It hasn't come back.

Dr. C. was genuinely apologetic that there was no wax ball he could clear. I made an appointment with our regular audiologist (January 12th) to have another test. If these results are confirmed, Julia's hearing aids will be reprogrammed and I'll try to program my mind to say "severe hearing loss" rather than "moderate."

Until the next test, there's still hope. This test was at the end of a long day. Maybe she was just tired.